PhoebeSteps: Infusion #3; No Active Arthritis!

I'm so exhausted, just physically and mentally, so I'll try and keep this post on the briefer side (for me, ha ha)

Morning went great, everybody out the door smoothly and with good time. My traffic app Waze is still on its mission to show me new ways to drive to Palo Alto every single time. This time it took me over 24, and then was thinking of putting me on 13 (so I would have passed by Jason's work), but then it changed its mind and put me going directly through Oakland and Hayward and then I went down through Redwood City. There started to be lots more freeway numbers and I don't remember them all. It took about an hour and a half. Going back, I went through Redwood city again, but then it once again sent me through downtown San Francisco and back along the Bay Bridge. It took me 3 hours. *dies*

We arrived and saw that we were going to have the same nurse, Dawn that I had liked. Sadly, the Child Life person who owns the therapy dog was not there that day, but we had a man named Jake come by. We had to wait while they were ordering one of those crib gurneys that I do not like. I guess they don't get too many patients under 3 coming in? Finally we got situated, same room, same side as before. I like the consistency, though I think that the touch pad thing on the other half of the room may work better than the one on Phoebe's side.

Phoebe still has a lingering cough, which concerned them, but her lungs sounded clear so we went ahead and did the infusion. We're supposed to watch her extra carefully.

Phoebe still did not want to drink the benedryl. I don't think it helped that it was offered to her right before they were prepping to do the IV, so there was definitely not a lot of time to wait around for her to cooperate. The promise of an M&M after was not enough to negotiate in the moment. Eventually I held her and Dawn squirted some in her mouth, and this time she actually did gag hard enough to spit a lot of it out. Unfortunately, because they can't really measure how much she swallowed and how much she spat out, they couldn't redose her. So they were a little more concerned about allergies--- rashes, hives, fevers, delightful reactions. Though at least she's had it 2 times before, so we're hopeful she's good for now (allergies can appear at any time).

Since the other bed was not in use, I sat there with Phoebe in my lap, while got the IV put in. Sigh. We had to do it twice. The first one was really bad, and Dawn tried really hard to get it to work, but it wasn't going to be good enough. I don't really want to write about it. Phoebe held it together better than me for the second one, I was totally tearing up, but couldn't wipe my cheeks or nose because I was trying to hold Phoebe and didn't want to move or upset her. I don't know. I'm sure it's not easy for anyone, but it just breaks your heart when your child is being poked and has go through all these intense medicine.

So let's move on to the high point of the day:

Dr. B came to examine Phoebe! She is just such a comforting person. She examined Phoebe and said that everything looked very good, and her hand was so smooth--- she almost seems shocked that Phoebe's cyst is completely gone, we are very lucky there. As of today, we are declaring this Day 0 of Phoebe having NO 👏 ACTIVE 👏 ARTHRITIS 👏.

If Phoebe just had arthritis, we could continue with treatment for 6-12 months and if there were no flares in that time, we could start weaning from medication at that point, while monitoring for flares.

Because of Phoebe's uveitis, as I was pretty sure she had said before, we will be doing this for the next two years. So. 2020, game on.

In the meantime though, we do get to stop giving Phoebe naproxen. While it can help with inflammation and pain relief, it is just a drop in the bucket compared to mtx and Remicade, so we can try going without it. Dr. B brought this up herself, which was super awesome because I had actually put out a post on Facebook group asking how necessary it was, as we were still doing it 2 times a day and Phoebe is not really in any pain. So, I'm glad to drop it. Even though Phoebe never seemed to have any digestive issues, I know it's pretty rough on your stomach.

Dr. B asked if we were interested in switching to Humira now that the pediatric formula is available. I said no, not for now. If the infusions were more traumatic, I would say maybe it would be worthwhile to switch. I mean, they are not great, but they do take the pressure off of us for having to be the ones torturing her. The IV placement is probably equally bad as a shot, but once it's time for the infusion, it's pretty low key. Also, I don't want to exhaust our biologic options until it's competely necessary. Dr. B completely agreed with me, and said that was what she would recommend, but would have also understood if we wanted to try something else.

We watched Elmo in Grouchland. Mandy Patinkin was the selfish villain, who wouldn't share. He looked like he was having fun, chewing up all the scenery while wearing enormous fake eyebrows. After that we watched Rapunzel, but Phoebe napped through most of it.

After that, we flushed with saline and did the mtx. Dawn completely suits up to handle the mtx, because it is chemo. She wears gloves, a coverall gown, and a face mask with an eye shield attached. Yup, we are putting that stuff in my baby every week, guys!!! 😥

Phoebe woke up when it was time to take all her stickers off and was very, very upset by the process. At last we packed up to leave. On the way out, I met a mom in the hall who had a baby. Her 3 year old was in another part of the short stay unit, having dialysis because she was born without kidneys. She wanted to know what we were doing here and, after looking Phoebe over, made the "classic" unwanted observation:

Image result for but you don't look sick

Good luck, Phoebe, you might be hearing that for the rest of your life.

Anyway, she was really well meaning, but decided to tell me all about deciding not to abort her daughter because they found out so late, they couldn't do that and then also about her own medical conditions, places she lived, and something that she had that went away or she grew out of and maybe it would be the same for Phoebe..... (reminder, you do not "grow out of" JIA. You can attain remission, but that's doesn't mean it won't come back.) Eventually I had to cut her off so I could go use the bathroom and then get going, due to the already mounting traffic (it was 4pm by then). Otherwise, I probably would have just kept politely listening to her tell me her life story, because I tend to get sucked in to that kind of thing. Good bye, random lady, best of luck with all the family health problems...... She said she was going to pray for Phoebe, and I believe her.

EDIT: oh yeah, and she told me I should have kept breastfeeding longer and could have kept going longer pumping! I couldn't remember why she'd irked me so much from describing her, but oh yeah, that was definitely over the top! grrrr!

Despite the good new, I'm just totally wiped out and a bit weepy. And that was before all the endless traffic to go home. I'm trying to stay strong, but it's just so hard.

I had a voicemail from the Arthritis Foundation lady and she said if we raise about $500 more, we'd be at $5,000 which would then boost us into a category to get sent to one of the national JIA conferences in 2019. That would be cool, but I'm not sure who on earth else we could hit up and I'm a little tired of asking people for money right now! 😟

That being said, plans are already in the works for the return of Team Phoebe Steps for 2019..... Our wonderful friend Alyssa is working to add us as the charity for our annual local steampunk convention to honor! I'm so grateful and excited!